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Dealing with a chronic illness takes lots of resources. We've pulled together lots of strategies to help you make the most of every day.
I love a challenge. So when my best girl Natalie challenged me to join her in the Hustle Up the Hancock a few months ago, I said yes. I trained and trained. And I wrecked my body. Here's a short tale about not meeting my goal, why that's OK, and a little request for help from you, dear fellow ChronicBabe.
Posted: 2/19/2013 in Coping
I can't survive big pain nights like this without you. If ever you doubt me, doubt my sincerity, doubt my level of understanding, bookmark this page. Come back to it. Let it remind you that I'm in your shoes every day. We are sisters. We are community. I couldn't do this without you.
Posted: 8/29/2012 in Coping
You might be surprised by how often I hear this question: Maybe YOU haven't felt this way, but how am I supposed to cope on the days when I want to give up?
Oh, ladies. If you think I've never wanted to give up, you've got me all wrong. I've had plenty of those days, and I'm sure in my life I'll have at least a few more. Even the most kickass ChronicBabe has moments of self-doubt and exhaustion and frustration.
I've got a few ideas that I think will help you feel better.
Posted: 8/12/2012 in Coping
A quick update: You are awesome. Do not feel guilty about being sick. I've got some tips that should help you feel awesome in spite of illness. Now, that was simple, wasn't it?
They say a picture is worth a thousand words, so guest blogger Selena recently decided to draw her own illness picture and was both humbled and amazed by the results.
Are your fibromyalgia symptoms driven by stress? Stress and fibromyalgia are intricately intertwined… and it shows! Under stress, the digestive system goes into mutiny, the muscles snap to attention, and the brain tries to run the whole show, finding as much success as the Wizard of Oz behind his veil of disguise. Fibro expert Sue Ingebretson offers some suggestions for tackling stress—which work for women with all kinds of chronic illnesses.
Posted: 10/26/2011 in Coping
Guest blogger Sara Ringer shares her personal story of diagnosis with ulcerative colitis and crohn's disease. It's a bit intense, but it's very real. And even as hard as it is, she is still loving life!
Posted: 10/22/2011 in Coping
Of course, there were plenty of days where I was stuck in bed or on the couch due to flare-ups, but on the days I could get out, I did, and I tried my best to make them count. It was rejuvenating, I reconnected with my friends, both old and new, in a way I never really experienced. I was also able to stick to a budget; you know medical costs are not cheap. I focused on not only being Fabulous and Sick but also Fabulous and Free.
In a World With Less Pain, I Could... Stop feeling like everything is just TOO MUCH! Heather Grace speaks out at the American Pain Foundation's "World Without Pain" website on Facebook, and shares her thoughts with us, too.
Posted: 10/9/2011 in Coping
So often I'm asked, what's it like to have fibromyalgia? And my answer mostly focuses on the daily pain I experience. But I forget to tell folks about the fatigue, the exhaustion, the flat-out tiredness I feel so often. Today's one of those days: I feel so wiped out, even basic tasks are taking the wind out of my sails. So I'm talking a bit about that, and showing some pics in honor of Rachel's PFAM about Wordless Wednesdays and photos that show off live with chronic illness.
Posted: 8/22/2011 in Coping
It's day 18 of the WEGO Health (they're @wegohealth on Twitter) Health Activist Writer’s Month Challenge (HAWMC)*, in which they offer a blog prompt per day for a month, and our lovely organizers have asked us to give us our daily schedule from the moment we wake up until the moment we go to bed. WHAT?! No way. First, my schedule is never the same from day to day, because I'm self-employed. Second, some days, I'm all flared up and I feel like crap and do nothing; other days I feel great and I do a ton.
Hmm. This is a quandary. I think I'll offer two scenarios. A great day, and a flare-up day. OK?
Posted: 4/18/2011 in Coping
It's day 12 of the WEGO Health (they're @wegohealth on Twitter) Health Activist Writer’s Month Challenge (HAWMC)*, in which they offer a blog prompt per day for a month, and they've asked us to write an ekphrasis post - to write about another art form. I've chosen a gorgeous photo from Flickr's Creative Commons pool, of a sunset in Sri Lanka, taken by AnnieGreenSprings.
Posted: 4/12/2011 in Coping
It's day 9 of the WEGO Health (they're @wegohealth on Twitter) Health Activist Writer’s Month Challenge (HAWMC)*, in which they offer a blog prompt per day for a month, and today's prompt is blessedly mellow: Health Activist Choice! Write about whatever you want today.
Well seeing that I took the whole weekend off from blogging, and it's really Monday, urm, hope you don't mind. It's fitting, actually, because what I wanted to do on Friday was to take the whole weekend off.
Posted: 4/9/2011 in Coping
On the 5th day of the WEGO Health (they're @wegohealth on Twitter) Health Activist Writer’s Month Challenge (HAWMC), in which they offer a blog prompt per day for a month, our lovely organizers ask us to do something I can't stand: write poetry. Haikus, to be specific. Ugh. Write one or more, they say. Double ugh.
Did I mention I don't like writing poetry?
So you get one. Just one haiku. That's it.
Posted: 4/5/2011 in Coping
This is my second post for WEGO Health's (they're @wegohealth on Twitter) Health Activist Writer’s Month Challenge (HAWMC)*. They're offering a blog prompt per day for a month, and I decided to give it a shot. (Now, I started a couple days late, so I'm writing my first three posts all in one day. Don't judge! And...it's not too late to sign up yourself if you're a blogger!)
Today's challenge: Word of the day. Pick a word from the dictionary or a book nearby and write a post, possibly related to your condition. Here goes:
One of my favorite programs on NPR is This I Believe. These little personal stories about strong convictions sometimes buoy me on tough days, or make me giggle, or teach me something new. Like when Brian Eno says that he believes singing will make me more sexually attractive. Or when Kay Redfield Jamison reminds me that, "unless one wants to lives a stunningly boring life, one ought to be on good terms with one's darker side and one's darker energies." (Kay lives with bipolar disorder.)
I've been looking for some more of that inspiration lately. There have been a few days lately when I just felt lost. Completely, utterly lost. I've cried myself silly, until my throat is raw and I can't even squeak out a human sound. Things got so bad I went beyond throwing a pity party; it was like the pity party had ended and I was the rude guest who just wouldn't leave, staying drunk on the couch, talking stupidly about nothing while you try to load the dishwasher. So even though the past week has brought a great upswing, I know it won't last forever. Life with fibromyalgia means flare-ups, especially during stressful times. So I thought it was high time I wote myself a reminder list of things I believe in, a list I can refer back to later when things get bad again.
Editrix Jenni has a good pal, Leah Jones, who recently walked the Susan G. Komen 3-Day For the Cure. She wrote about the experience and has some awesome messages about managing pain and listening to her body.
There are so many things we can't control, especially when it comes to our health. But we CAN exercise some control over our surroundings. Creating a soothing space is a terrific way to help manage all the yuck that comes with chronic illness. Here are my five favorite, trusted tricks to help create an awesome space that helps you feel AWAP (as well as possible).
Optimism is not the easiest quality to come by. For us ChronicBabes, it can be hard to embrace fully. But there's a positive energy in the air right now, and I think the time is ripe to capitalize on it and remind ourselves that we can accomplish SO MUCH with just the right attitude.
In two days, the U.S. will have a new president, and with him will come a wave of change. Our new leader represents optimism in action, a concept I've been thinking about a lot lately. For those of us who live with chronic illness, optimism is a precious commodity—something we cultivate and cherish. Barack Obama is a perfect example of what it means to not only be optimistic, but to take that positive energy and drive it forward to create a positive result...and to inspire others to do the same.
In honor of our incoming president, I've crafted a short list of five things I do to cultivate a sense of optimism in myself and the people I impact. These are simple things you can do in your own life, too!
Well, that's probably a little over-dramatic. I'm not permanently one-armed...I'm just not allowed to use my right arm and hand for a few weeks as I heal from surgery. But for all practical purposes, I've been one-armed for the past three weeks and I'll be one-armed for a few more.
Since smashing my wrist three weeks ago, I've learned a lot of things. Practical tips, new ways of relating to people, the value of pump bottles for shower products, and the strong power of gratitude when it comes to getting your head right.
Here are just a few of the things I've learned, in no particular order. No matter what your illness or disability, I hope you find them useful.
Oh Babes, Editrix Jenni's flare-up...it is so big. It's been ebbing and flowing for a couple weeks now and it's draining her energy. But she's committed to maintaining her self care regimen during this tough time, and thought she'd take a moment to remind you, too, that it's important to take small steps every day to keep yourself feeling as well as possible (or, AWAP).
Here are some of her favorite ChronicBabe resources on self-care from our past three years of resources. She refers to these when she's not feeling so hot; you may want to bookmark them, too.
Posted: 8/18/2008 in Coping
I've slipped. It's been a rough week and I totally threw my self-care regimen out the window. Let's see: I've eaten some horribly unhealthy meals, blown my sleep schedule to bits, relied more on medication when I could be using relaxation techniques to handle stress, overworked when I knew my body was ready to quit...the list goes on and on.
But I'm not going to beat myself up over this. I'm through playing that game—I used to get mad at myself all the time for being an imperfect patient, but no more. Now my aim is to just get real with myself, take ownership of what's mine, and do my best to take good care.
With that in mind, here are 10 things I promise myself today. I know I won't always be perfect with them, but I'll do my best. Check them out, try a few and consider writing some of your own.
Posted: 7/20/2008 in Coping
I had a brush with my old friend hypochondria recently. But Mark Levine's recent New York magazine article "Listening to Hypochondria" left me feeling secure that I'm not a hypochondriac, and hopeful for folks who really are. Allow me to explain:
For the benefit of the Babes out there who are newly diagnosed, or who have been struggling and need that little extra inspiration, here are some of the things I've learned that are part of being resilient (there are even more tips on resiliency available from the American Psychological Association).
Yesterday, I sent out a personal note to our Goodie Bag subscribers. It came from the heart, telling my struggle with taking time for myself during busy periods and the toll that ignoring my basic needs was taking on my body. The letter resonated deeply with subscribers. I received more feedback emails than ever before, which tells me this topic goes to the heart of what many young women with chronic illness experience. So I'm reprinting the article here, in hopes that you'll all learn something and apply it in your own lives.
Posted: 4/16/2008 in Coping
Taxes suck. I mean, the part about them funding services we need—like police and firefighters, social security and health care for kids—that's good. It's doing tax paperwork that sucks. In years past, I've rushed around collecting scattered documents, trying to find receipts, and pulling everything into piles I then took days to decipher. For a Babe like me with anxiety and fibromyalgia, it would always be a bad health time. In fact, I had to block off three or four days at least to get everything done.
But I've been getting into a rhythm with my paperwork, I hired an accountant, and I've found some other tips that really help. So without further ado, here are my favorite time- and energy-saving strategies for getting your taxes done.
Posted: 3/17/2008 in Coping
For the past few months, I've been thinking about being a turtle. Getting comfortable with the idea of taking my home with me wherever I go hasn't been the easiest; nor has embracing the idea of going slow and steady (versus my habit of anxiously, frantically tackling obstacles). But I'm working on it. I'm a turtle, and you can be one too!
Posted: 2/17/2008 in Coping
Whether it's new or persistent illnesses (or anything else crappy for that matter), maybe you've had a tough year and you're ready to enter 2008 with a fresh mindset. I've got a few ideas that will get you in the mood for some major self-improvement. (If you've had a great year, terrific! Keep doing what you're doing. But still read on for some ideas to make it even better.)
I am one resilient Babe, and I bet you are too. Dictionary.com offers this definition of resiliency: "The ability to recover quickly from illness, change, or misfortune; buoyancy." I offer this one: "The ability to get your act together after bad stuff happens, no matter how long it takes or how much you need to ask for help."
* The first in a series of articles about facing huge challenges and how ChronicBabes can do it well.
Posted: 11/24/2007 in Coping
Jocelyn Tomkinson has a congenital spinal cord injury (SCI) as well as chronic neuropathic pain, so she uses a wheelchair full-time, and has an implanted biomedical device for pain control. She writes from the perspective of a person with a physical disability, although she thinks a lot of this advice could be transferable to other conditions such as mental health, learning, or sensory impairments. Most of all, she was born to travel, and her goals are to visit every country before she dies, and to help other people discover the traveling life in whatever way works best for them! Here, she gives us her top tips for safe, happy travel with chronic illness and/or disabilities.
Posted: 7/20/2007 in Coping
Filmmaker Daneen Akers talks with Editrix Jenni Prokopy about the experience of creating "Living with Fibromyalgia: A Journey of Hope and Understanding." Profiles in the film included Daneen's mother, Darlene, and Lynne Matallana, president and founder of the National Fibromyalgia Association.
Posted: 4/30/2007 in Coping
Women spend way too much time taking care of other people. We want to please our bosses, take care of our kids, support our friends, be good girlfriends or wives, go to the PTA meetings, lead the Girl Scout troops, host the best parties...it's exhausting! When we get sick, those demands on our time don’t stop—and we often try to keep meeting them, at the expense of our own health. Here at ChronicBabe HQ, we think it’s time for change! It can be tough to stand up for our needs, but it's crucial. Here are 10 tips to help you make the most out of every day.
Posted: 4/2/2007 in Coping
I'm not the same girl I was a few years ago. Each time I take a cross-country trip, I'm reminded that I'm not the person I was in the late '90s - the chick who could sling a 40-pound suitcase without thinking twice, who could do a 10-hour travel day and then go dancing later that night. Now I'm the chick who shows up at the airport with meticulously packed lightweight rolling bags, an inflatable back pillow, a ziploc full of meds, and a reservation at a hotel that promises a comfy bed and lots of relaxing amenities.
Julieanne is a regular reader who responded to our call for ideas on how to de-stress in a recent edition of Goodie Bag, our twice-monthly free e-newsletter. Here are a few of her ideas - which we thought were great - for your consideration.
Posted: 12/5/2006 in Coping
For a brief time, I completely forgot that as a patient, I have the right to say "No."
Jill Cooper (a Babe with chronic fatigue syndrome) of www.LivingOnADime.com offers great tips for making the most out of grocery store visits - including saving some money - no matter how tired you are. Useful stuff for ALL Babes!
Posted: 8/25/2006 in Coping
I spend a lot of time reading, thinking and talking about illness and health. And no matter how I look at this, I come up with the same conclusion: You don't have to be a passive player. You play a big role in your response to illness, pain and fatigue.
Posted: 8/18/2006 in Coping
Babe Kerri opens a window on surviving her worst fear: experiencing a low blood sugar while living along for the first time. "I ignored the headache at first. I soaped up my hair, enjoying the way my sunburn ached a little bit under the pressure of the water. A few minutes passed. The headache was still there. I caught myself staring at the shampoo bottle; I had it in my hand and was fixated on the phrase 'Rinse,' wondering why it didn't say, 'Rinse and repeat.' My eyes unfocused like I was trying to see the sailboats behind one of those magic eye pictures. And there I stood. Still had that headache.
Posted: 3/1/2006 in Coping
Sometimes, a ChronicBabe is also aCUTE Babe. You know, AcuteBabe. As in, experiencing acute symptoms of some sort. As in, your Editrix has had acute back pain for the past week. Here are a few tips for ChronicBabes who are experiencing an ACUTE situation.
Yup, Crud. With a capital C. Mega-cruddy. Crap-a-doodle. Yucky. So I'm taking a day off of work. That's right, no work. No work emails, no work phone calls, no filing, no sending of invoices. No writing about concrete. But I am taking a short break from the couch and bad daytime TV to remind you that there will always be days when you just feel like crud and there's no getting around it - even the busiest, most well-balanced Babes need to take a day off. Here's how I'm taking care of myself today.
It's that time again: The Holiday Season, when you're supposed to feel joyous, thankful and happy to celebrate with family and friends. It's a lovely idea. But people who work and live with chronic illness more often than not approach this time with mixed feelings, if not dread. Here are some tips for thriving this holiday season.
If you're a regular reader of the site, you're probably a little annoyed with me, or perhaps disappointed. That's understandable. I haven't been around a lot these last couple weeks.
How come when I go on vacation, my chronic has to come with me? Wah. Wannnnnhhh. Venting. Whining. Wannhh.
"God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference." For most of my life, I hated that $&^%ing prayer.
Posted: 8/15/2005 in Coping
About four years ago, I woke up one morning with the worst itch in my nether region and boobs. I tried everything to avoid going to the doctor, but finally, there came a point when I could no longer ignore the problem. I was diagnosed with vaginal eczema, a.k.a. Fungal Jungle.
Despite months of serious foot pain, I confronted my fear of business travel and made the leap - and learned some valuable lessons about asking for help and healthy traveling.
Posted: 6/12/2005 in Coping
Yea, you heard me. A very crappy day. Go for it. It might wind up being part of your prescription for success.
Posted: 6/9/2005 in Coping
Meet my husband, Steve. Would you like to know what Steve loves to say to me when I'm complaining about what ails me? WAAAAANNHHH.
Sometimes you just need to be ridiculous. Seriously, go for it. Sometimes you just have to ride the cheeto.
Articles that use Coping as a secondary category:
Years ago, on the recommendation of some friends in the chronic illness world, I spent a month eating gluten-free. It sucked. It was so hard. At that time, the concept of eating gluten-free seemed nearly unknown. A few excellent resources existed, alongside a bunch of partial—and often incorrect—information.
Today, the landscape is totally different, and I'm excited to be taking a step toward better health. Care to share your knowledge with me and all others who are exploring the gluten-free lifestyle?
Someone I know has just—finally—received a diagnosis of rheumatoid arthritis. When she told me what happened in the appointment, she mentioned her relief that she hadn't lost her mind or made it all up. This despite having spent months experiencing obvious physical symptoms that something was Very Wrong indeed. I'm pretty sure most of you are nodding in recognition, having been in that place of thinking you'd lost your mind.
That's when I started wondering why it is that we doubt ourselves so much. And I think I’ve found a few reasons.
I’m sure we’ve all had well-meaning friends, family members, and even doctors encourage us to reduce the stress in our lives in order to improve our chronic illnesses. (And I know I’m certainly not feeling any less stressed when I read a story about research like this that suggests my stress is more likely to make me sick since I’m a woman. Ugh!) Take a deep breath. No seriously. Take a deep breath. Let it out. And then another. Meditation can make a big difference, says guest blogger Megan.
So I’m now a year into this whole balancing motherhood-working-illness thing. I originally planned to write this post, the first in a two-part series, three weeks ago, and yet here I am. There’s a lesson there for anyone tempted enough to write about balance:
It doesn’t really exist.
Happy Halloween, babes! Thinking about Halloween, about getting all dressed up in a costume to celebrate, inspired this edition's blog carnival theme of Behind the Mask.
When I was diagnosed with lupus in my early teens, I had my first, true taste of worry. I was terrified that having lupus meant that I would live a painful, exhausted, unfulfilled life. In short, I thought that there was little chance that I could have lupus and be happy.
I thank God every day that I was absolutely wrong and that it is possible to have a chronic illness and be happy. Here's my list of 12 resolutions to live the happiest life I can!
If you could receive one gift to help you through this life with illness, what would it be? We asked this most recent ChronicBabe blog carnival question on Twitter and Facebook and here are the answers we recieved...
I’ll come clean at the start of this—I’m a babe with a kink in her step in more ways than one. Before I started to get ill, I was pretty feisty. I had a libido that would equal a teenager’s and I liked to try new stuff. My husband and I have a fairly unequal relationship in the bedroom—he is well and truly in charge. In fact this is one of the things that made him so attractive in the first place. We like a bit of kink.
Fast forward to now, and I’m in pain pretty much all the time. Given how important this side of things always has been to us, when it became apparent that this wasn’t going to go away we decided that we needed to make some adjustments so that we can still enjoy getting our kink on, because without it I (and he!) get grumpy and frustrated. I hated that along with all the other stuff that this part of me was being taken away and I didn’t want to let it go.
Sure, the holidays can be wonderous and joyful, but they can also be stressful and challenging, even more so when you are coping with chronic illness.
We asked you to send us your survival techniques and tips, as well as stories about your experiences and advice for doing things differently from years past and we received a lot of great advice. We also went searching around on the Internet for holiday advice and found some new favorite bloggers too.
Hey Babes, not exactly a crisis over here, but still, a big enough flare-up that it took Editrix Jenni a few extra days to put together this edition of the blog carnival. So here at ChronicBabe HQ, we can relate to crisis management! (Well, we already could, but...you know.) Following are a lucky 13 takes on handling crises when you're a sick chick. If you like what you read, I hope you'll follow up with some feedback on our Forum.
ChronicPal Jennifer Jaff of Advocacy for Patients with Chronic Illness, Inc., offers her perspective on where we are with health care reform. As always, we love to hear what she has to say:
Several important provisions of the health reform law will take effect this month. September 23, 2010, marks the six-month anniversary of the signing of the reform law. While you may not feel like celebrating that fact, it's important to know that several of the law's provisions will kick in on that date or shortly thereafter.
For those of us with chronic illness, dealing with the medical establishment—whether it's doctors and nurses, or billing specialists and health insurance reps—can be a big pain in the tush. Other times, we find ourselves in positive interactions and great relationships. Here's what 15 of our fave bloggers had to say about their dealings with the medical establishment.
Welcome to The Chronic Babe Carnival #9: The Big Breakdown: When Everything Goes to Hell, What Do We Do? Sixteen ChronicBabes tell you exactly how they deal when things go down. We've got some great stories and tips for you, Babes
I can't even come close to listing my entire team. It would take me days. But I hope my very incomplete list helps you imagine who could be on your team. Because here's the deal: Life's better with a team. You learn more, you have more fun, you get to share more incredible moments, you get more gifts, you learn to give more and be a better friend...the benefits are innumerable. I encourage you to make a list and keep adding to it, changing it, remembering to recognize the people on it whenever possible, and always give as good as you get!
It's a simple question, without a simple answer: what are your favorite self-care tools and techniques? Everyone has a different approach. Here are 18 bloggers who share their faves.
I've had many opportunities lately to listen to my gut. Sometimes I trusted it, sometimes I didn't. I'm doing my best to learn from my mistakes. And I think there are some lessons here for you... this is a SHORT little tips list from Editrix Jenni, whose hands hurt today but has a strong desire to share what works...
We're thrilled to host Patients for a Moment this week, where fellow ChronicBabes answer the question: What's your most laugh-out-loud illness-related experience? Thanks for letting us host, Duncan!
Many of us ChronicBabes lives with everyday pain. Here are a ton of different perspectives on what it's like to live with pain - and how to do it with style, humor, and panache.
Living with a chronic illness is hard enough; throw in a career, and remembering to find time to live and really enjoy life can be a challenge. Find what's important to you, even if it's something so simple as a circle that takes you back to your childhood. Come with me on a journey of a career with a reward of hula hooping and meeting new people.
Editrix Jenni Prokopy has been partnering with HealthyWomen (formerly the National Women's Health Resource Center) to create some awesome fibromyalgia awareness pieces and advice for living well with this chronic pain condition. There are even some supercool videos with Jenni talking about healthy living, workplace and travel tips!
...but it's not really over. There are still a ton of great resources available! Starting with Editrix Jenni Prokopy's presentation on healthy boundaries for sick chicks.
I was asked recently to write about thriving at college in spite of chronic illness. And although I didn't get really sick until after graduation, I did have a recent experience that felt just like going back to school. Here are just a few thoughts that might help inspire you...I know the experience taught me a few things!
I'm packing right now for a trip next week to Austin, Texas, an awesome city that will be packed with folks for the annual SXSW festival. And as I prep for the trip, so many questions and concerns are swirling in my brain! I'm sure you face some of the same things when you prepare for travel.
In no particular order, here are the concerns I'm facing, ideas I'm considering, and advice I'm putting into use. I'll look at accommodations, fashion, dining out (or not), managing your energy, setting realistic goals and much more. Take what you need and share with anyone who could use the tips.
I've never been all that great at setting boundaries. Until recently, that is—I've spent some time over the past couple years learning what boundaries are and how to use them effectively. And my recent wrist injury offered some reminders that boundaries are flexible and ever-changing. So why are boundaries important for ChronicBabes, you ask? Because as sick chicks, we're working with already-reduced resources—so we've got to protect what we DO have. Read on for some examples of boundaries in action and tips to help you strengthen your own.
Editrix Jenni is always on the lookout for things that can make her feel better. Even if they don't make her pain or fatigue go away, a new trick that makes her feel stronger or more capable or happier is a welcome addition to her bag. She's got some tips that will help you fight your fears and try new things today!
Life with chronic illness is hard. It sucks. We all know that. And plenty of us talk about it, in person to our friends and family, or online in forums or blogs. But all that talking about it...thinking about it...obsessing about it...eats away at our joy.
We've got some basic tips you can start using today to reclaim your joy. Sure, there's no way everyone can feel joyful every moment of the day—but you CAN reclaim joyful moments and live a more fun life, no matter how sick you are.
This is just a quick note to let you know about a presentation I'm giving tomorrow as part of National Invisible Illness Awareness Week 2008. Read on for instructions on how to listen and call in with questions. It's tomorrow, Babes—don't miss it! (OK, if you do, the recording is archived.)
Invisible Illness Week is Sept. 8-14, 2008, and ChronicBabe is a big participant. Editrix Jenni Prokopy is a featured speaker on Wednesday, Sept. 10 at 2pm Central time (call-in details to come)...we've donated t-shirts to be given away as prizes...and we'll be blogging about what it's like to live with invisible illness all week.
One of my favorite enewsletters comes from Rosalind Joffe, whose site Working with Chronic Illness has a ton of great resources. Today she posted a new article that touched a nerve. In "Chronic Illness Isn't Sexy," she talks about the banality of managing chronic illness and how difficult it is to help people understand what your life as a ChronicBabe is like...or to even draw their attention to the seriousness of it, especially if it's an "invisible illness."
But I think chronic illness CAN be "sexy." In my public relations work, we look for what's sexy in a topic—what's the nugget that sells the story, the tease that draws people in for a deeper look. Here are a few examples from my life, and from some of yours.
What happens when a ChronicBabe—a gal who's accustomed to spending energy on herself whenever possible—needs to become a caregiver? What happens when a Babe has constructed a life that's all about taking care of herself, and suddenly she's taking care of someone else?
Being on the other side of caregiving helps us ChronicBabes learn what our own caregivers might go through. It's not about guilt—feeling bad about being sick, or feeling like a burden—it's about accepting the situation you're in and doing your best to make it easier if possible, whether you're the ChronicBabe, or the person who cares for the ChronicBabe.
Apparently I touched a nerve the other day with my piece on wishing I didn't care so much about what others think. Turns out I'm not the only Babe who spends too much time worrying about what others think think of me. In fact, besides the get over it piece, this one brought out tons of reader comments. So many, in fact, that I thought I'd share them with you. Sometimes it just feels good to commiserate.
I want to live my life and not imagine what other people are thinking of me. If I released all that wasted thought, I could do so much more. I could cancel dinner plans when I'm feeling fatigued and not spend time I should be relaxing thinking that my friends feel disappointed. I could wear sweatpants when I don't have the energy to pick out a cute outfit, instead of trying on a bunch of things when I could be getting my errands finished quickly and then relaxing. I could be moving on from an awkward conversation and relaxing instead of replaying it over and over in my mind. Do you see a trend here? For a Babe with anxiety and fibromyalgia, I sure spend a lot of time thinking about meaningless crap and using up all my valuable time and energy.
Several years ago, when I was diagnosed with osteoarthritis in both hips, I read everything I could find about coping with chronic illness. I was amazed at how often I'd stumble on a paragraph that advised patients to "look for the gift in your pain."
Pain is a gift? Thanks, but no thanks, I'd mutter to myself. I had just turned 44 and hadn't planned on slowing down so soon. I still had miles to go with my journalism career and a family that included a very active teenager. If pain was my gift, well, where was the return policy?
The old adage is true: There is nothing permanent except change. That saying applies to the inevitable shifts in our relationships with others. One of the things that seems desperately unfair to those of us who live with a chronic illness and ongoing symptoms is the impact it can have on friendships or romantic relationships. Many people have difficulty not only maintaining established friendships, but making new friends because their illness keeps them from being continually active and socially involved. Author Carol Sveilich offers advice on maintaining good personal and professional relationships even in the face of ongoing illness or pain.
One of the things that seems desperately unfair to those of us who live with a chronic illness and ongoing symptoms is the impact it can have on friendships or romantic relationships. Many people have difficulty not only maintaining established friendships, but making new friends because their illness keeps them from being continually active and socially involved. Author Carol Sveilich offers advice on maintaining good personal and professional relationships even in the face of ongoing illness or pain.
Regular readers of the site know that ChronicBabe is not all about me. Yes, I created (and run) the site. Yes, I write personal stories to share my experiences as a ChronicBabe. But it's not a conventional blog, focusing on just me me me. It's more about sharing ideas to help YOU, dear readers, and building a collective of many voices.
But this recovery period I've been in since our house was nearly destroyed in THE STORM in August has just about had me whipped, and I haven't felt the kind of energy I usually do, the energy that feeds me helpful ideas to share with you all. I've been drained.
So tonight, I decided to write to you about how living through a trauma like this is SO MUCH like living with chronic illness, so much like coping with a diagnosis and dealing with the aftermath. I think that if I get some of this off my chest, I'll be clear and ready to write productively again for you. And I want that very, very badly right now. So here goes...my laundry list.*
*P.S. For evidence that I am not always so negative, please see the rest of this site. :)
Jennifer Jaff is a total Babe: an attorney with Crohn's disease, she created Advocacy for Patients with Chronic Illness, Inc., a non-profit resource for Chronic folks who need legal assistance. We talk with Jennifer about her work with clients one-on-one, and her thoughts on HSAs and other health care issues in the news.
Babe Laurie shows us how she overcame guilt and re-learned how to have a social life she could love: I was on the phone with my best friend a few months ago when she said something that really hit me: "I shouldn't feel guilty for the things I can't control, only the things I can." It sounded so simple, so logical. And of course it was much easier said than done.
In this personal essay, writer Kim Moldofsky gives us a new perspective on coping: Two weeks ago I woke up to my grandmother's hands. It wasn't her gentle caress rousing me from sleep; rather, it seemed that her stiff, arthritic hands somehow replaced mine in the night. It was like the movie Freaky Friday in which a teenager and her middle-aged mom mysteriously switch bodies except I'm 35 and my nana passed away at 72. Like a curious infant I stared at my hands as I wiggled my unfamiliar digits. Where did these come from? How do they work?
Say, I don't suppose there might be some way I could get a ride from you? I mean, if it's not too out of your way or anything, feel free to say no..." I hear my voice rise an octave, and there is something unflatteringly girlish about it. Despite my attempt to sound casual, I know I sound needy.
A ChronicBabe recounts her experience finding--and learning to love--cognitive therapy as a treatment for anxiety.
I was brooding under the covers, talking to my mother on the phone. "I should just cancel my book tour,"I told her, frustrated to the point of tears. "I can barely get to the bathroom. How can I possibly get across the country?"My knee had been badly injured two weeks earlier, and hobbling to the kitchen had become about as much adventure as I could stand.